Since my December 2, 2005 Non-Hodgkin Lymphoma diagnosis, I've been on a slow-motion journey of survivorship. Chemo wiped out my aggressive disease in May, 2006, but an indolent variety is still lurking. I had my thyroid removed due to papillary thyroid cancer in 2011, and was diagnosed with recurrent thyroid cancer in 2017. Join me for a survivor's reflections on life, death, faith, politics, the Bible and everything else. DISCLAIMER: I’m not a doctor, so don't look here for medical advice.

Friday, July 20, 2007

July 20, 2007 - Relapse

This afternoon, as Claire and I sit in one of Dr. William Lerner's examining rooms, he hands me a prescription for another PET/CT scan. At the bottom, he's written: "DX: Lymphoma in relapse for restaging."

Yes, that's right. I've relapsed.

There's some good news, in the midst of the bad. The pathologist's analysis of my core-needle biopsy sample has revealed only small lymphoma cells. The lab-coated geniuses peering through microscopes found no trace of the larger, aggressive cells that were present at the time of my initial diagnosis.

Dr. Lerner says this doesn't surprise him. Other patients he's had in the past, with the same "diffuse mixed large and small cell" grading, have been treated successfully for the aggressive component of their disease. The indolent, small cells, on the other hand, are always much harder to defeat – in fact, indolent lymphoma is considered "incurable, but treatable."

I ask Dr. Lerner if patients like me, with the "diffuse mixed large and small cell" diagnosis, can in fact be considered to have two different types of lymphoma. He agrees that, yes, that's an accurate way to describe it. So far, the R-CHOP chemotherapy regimen seems to have wiped out my large, aggressive lymphoma cells (please emphasize the "so far," because it will still be some time before we can venture to use the word "cure," referring to those aggressive cells). As for the small, indolent cells, they're likely to keep bugging me for some time to come.

Dr. Lerner conducts a physical examination, spending a great deal of time touching and probing my neck and armpits with his fingers (these are parts of the body where lymph nodes are close to the surface). I ask him if he can feel the same swollen nodes under my jaw and at the base of the neck he felt the last time I was in his office. He says he can't – but, this comes as no great surprise to him. Cancerous lymph nodes swell up, but sometimes they also inexplicably diminish in size.

Locating the tiny scar from the biopsy needle at the base of my neck, he probes that area. He says he can't feel the deep-down, swollen node from which the biopsy sample was taken (but then again, neither could the surgeon, Dr. Gornish, as I lay on the operating table several weeks ago).

So, what's ahead? The first order of business is another PET/CT scan. I'm due for one, anyway – more than three months having elapsed since my last one – so there shouldn't be a problem getting the insurance company to fund it. Second, I'll return to his office for another bone marrow biopsy – I'm due for one of those, too. Third, I'll take those scan results, along with the biopsy slides and pathologist's report, up to Dr. Carol Portlock at Memorial Sloan-Kettering Cancer Center in New York. (She's the lymphoma specialist I've been conferring with, for second opinions.)

As for treatment, Dr. Lerner says there are a number of different directions we could go – and, since this is a slow-moving cancer, we can take our time to consult with other specialists and make up our minds. With this kind of cancer, he admits, treatment decisions "are not black and white." Put a hundred lymphoma specialists in a room, he predicts, ask them what they would do, and they'll come up with a range of recommendations. Here are the possibilities:

• (1) Watchful waiting – It's a slow-growing lymphoma, and I have no symptoms right now, so one approach would be to just wait and see what develops (this approach is more commonly used with older patients, rather than younger ones like me, but it could still be appropriate if the next scans continue to reveal only a few problematic lymph nodes, and if I continue to have no symptoms).

• (2) Aggressive chemotherapy – This would be treatment with a second-line chemotherapy regimen, with the usual grisly side effects. It would almost certainly wipe out all discernible traces of lymphoma – although it's debatable whether it would be more effective, in the long run, than the other options.

• (3) Stem-cell transplant – This is a form of second-line chemo, but the drugs are so toxic, they would take down my entire immune system. The doctors would harvest stem cells from blood ahead of time, freeze them, and use them to rebuild my immune system after the treatments are finished. The stem cells would come either from one of my brothers (allogeneic transplant) , or from my own blood (autologous transplant) . Stem cells from a sibling donor are more likely to wipe out the cancer, because there's zero chance any free-floating cancer cells could slip through the sieve – although they offer their own set of challenges.

• (4) Treatment with Rituxan alone – My R-CHOP treatment was a combination of Rituxan and the four-drug CHOP chemo cocktail. The next time around, I could be treated with Rituxan infusions alone. The side effects of Rituxan are pretty much limited to some uncomfortable reactions during the infusion itself – there's no hair loss, no nausea, no mouth sores, none of the other miserable side effects people associate with chemo.

I ask Dr. Lerner about the radioimmunotherapy drugs, Bexxar and Zevalin. He says that, yes, one of those would also be an option:

• (5) Bexxar or Zevalin – Both these drugs are Rituxan with an added kick: a tiny fragment of radioactive material that piggybacks on each molecule of the medication. The Rituxan does its thing, targeting the CD-20 protein on the surface of the lymphoma cells and sending out its microscopic smart bombs to attack those cells: but, then, the little radioactive hitchhikers deliver their own payload as well, making it a one-two punch. Dr. Lerner's office is not set up to administer Bexxar or Zevalin, but he sometimes refers patients to Jersey Shore Medical Center, which is licensed to deliver these treatments. Bexxar and Zevalin are new drugs, he cautions, and it's still not clear what their long-term effects are. There's some chance the radioactivity could cause long-term damage to my bone marrow – and, since, at age 50, I'm looking ahead to many years of living with lymphoma, this is something he advises I weigh carefully.

I mention the recent article in the New York Times, about the relative slowness of the oncology world to adopt Bexxar and Zevalin (see my June 23 and July 14 blog entries). Dr. Lerner says he isn't entirely happy with the article – he suspects the Times editorial staff has it in for the medical profession, and particularly for the pharmaceutical companies – but the facts about the drugs presented in the article are essentially accurate. He says he especially resents the implication that doctors are influenced by financial considerations when it comes to choosing the most effective treatment to recommend. (For the record, Dr. Lerner impresses me as a person of principle, who would not be easily swayed by such inducements.)

I also mention that, the first time I conferred with Dr. Portlock at Memorial Sloan-Kettering, she suggested I consider a clinical trial for a new cancer vaccine protocol. This clinical trial was limited to newly-diagnosed indolent lymphoma patients – so, once the MSKCC pathologist found aggressive as well as indolent cells in my tissue sample, that deal was off. Although vaccine treatments are not yet generally available, should Dr. Portlock be aware of another clinical trial for which I'd qualify, that would give me yet another treatment option:

• (6) Vaccine therapy – Cancer "vaccines" are quite different from any other kind of vaccine. They're not so much a means of preventing disease, as a way of treating it. If I were to qualify for vaccine therapy, a sample of my malignant cells would be harvested through another biopsy, and sent off to a laboratory. In the lab, a custom vaccine would be cultured from the malignant cells, which would then be injected back into my body at regular intervals, over a period of time. (The clinical trial I was briefly looking at made use of monthly injections over a two-year period.) The vaccine would essentially teach my own immune system how to fight off the cancer.

I feel particularly fortunate in having five, and possibly six, treatment options from which to choose. I ask Dr. Lerner if he would care to rank them in some sort of numerical order, but he says he's not able to do so. There are so many factors involved in the decision – and, besides, I ought to wait and see what the next set of scans reveals, and also hear what Dr. Portlock recommends.

He's just laying out all the possible options, at this point. This is an indolent lymphoma, so we have time.

I feel even more confidence in Dr. Lerner than I did before. He takes the time to explain things, and he seems naturally inclined to take a collaborative approach – not only with professional colleagues like Dr. Portlock, but also with his patients. He doesn't seem to let his ego get in the way: when there are multiple options to be weighed, he's not afraid to admit the complexity of the situation.

Stopping at the scheduling desk on the way out, I book a bone-marrow biopsy for Wednesday of next week. Later, after my return home, I get a call from one of Dr. Lerner's staff, saying that Atlantic Medical Imaging can squeeze me in for a PET/CT scan on Monday morning. A subsequent call from Atlantic confirms that my insurance company readily approved it, so we're good to go.

And how am I doing, in the midst of all this? I'm doing OK. From the time those swollen lymph nodes showed up on my last PET/CT scan back in March, the signs have been pointing to a relapse – so, it's no surprise. I've had plenty of time to get used to the possibility, and there's a certain comfort in finally emerging out of the fog of uncertainty. The fact that there are no aggressive cells in the tissue sample is good news, indeed – probably the best news I could have expected.

More and more, the phrase "living with cancer" seems to be my mantra. It's time to embark on the next stage of that journey.

2 comments:

On the other hand, you seem to be taking it rather well. Remember. Your best medicine is your attitude. It might not make you healthy or increase the length of your life, but it will improve every moment you have. (Have you ever read Stumbling on Happiness by Daniel Gilbert?)

Keep up the good fight and the good spirits. (Remember, your God watches over you.)

As it so happens, I just picked up Stumbling on Happiness at Barnes & Noble the other day (having heard its author on The Colbert Report). It's one of a whole pile of worthy tomes I hope to read at some point.

About Me

I am Pastor of the Lamington Presbyterian Church in Bedminster, New Jersey. From time to time I teach Presbyterian Polity at Princeton Theological Seminary and Presbyterian Studies at New Brunswick Theological Seminary. I am married to the Rev. Claire Pula, Director of the Bereavement Program, Hackensack Meridian Hospice in Wall, NJ. We have two children: Benjamin, a singer-songwriter, and Ania, an artist.